Our goal is therefore not to find a cure to this dreadful disease, as there are many ongoing clinical research trials in conjunction with the medical community that are tackling that problem head-on. Our aim is to inform and educate MND sufferers in relation to aspects of their life that they can take control of that will help improve quality of life and to signpost them to innovative therapies and treatments that are available to them. The road ahead for all sufferers is not easy and there is no silver bullet that can take all the problems away, but there is a more positive approach that can be adopted than simply accepting your diagnosis as a death sentence that you simply cannot fight. Paul has seen for his own eyes that with the right mindset, lifestyle choices, introduction of novel therapeutic and medical therapies, MND sufferers can achieve a great quality of life and continue to live a long and fulfilled life.
Hence, there are three main objectives that the All Paul Together community want to achieve:
Firstly, we want to be able to give Paul the financial support he needs in order to be able to cover any costs that he incurs related to this disease. Paul is availing of exploratory treatment in the United States on an ongoing basis which requires him to make the trip stateside at least twice per year for a period of three weeks at a time. In addition, Paul follows a home medical protocol, which again comes at a heavy price. Paul also faces ongoing costs related to transportation and accommodation related needs, as well as having to follow a strict diet meaning large weekly costs are incurred to maintain the level of health required to benefit from the US treatment.
Secondly, Paul is determined to help other people who are suffering from MND, by providing them with evidence-based information that they can use to support their day-to-day life choices in areas related to nutrition, sleep, activity, mental health and therapeutic treatments. Paul has developed a link with the Atlantic Technological University in Letterkenny in order to fund postgraduate research studies related to MND and certain lifestyle characteristics that can play a major part in disease progression. Through this partnership, and the support of ART Health Solutions software, Paul hopes to be able to better characterise the lifestyle factors associated with MND and ultimately provide evidence to help fellow sufferers make changes to their day-to-day life that will actually have a positive impact on their fight against this disease.
Thirdly, All Paul Together want to provide an online platform on which MND sufferers can access good quality, evidence-based, information at the click of a button. Good quality information related to MND and how sufferers can take control of their own destiny is very difficult to find. Paul wants to make this sort of information easy to access in order to help MND sufferers maintain a good quality of life and provide them with hope that there are areas of their life they can control that can help slow or even reverse symptoms.
These three objectives will not be easy but we are determined to develop a long-term strategy that will ensure they are all achieved and, in time, so we can provide even further support to the wider MND community through novel research and a holistic approach to fighting this dreadful disease.